3/31/2014

New Numbers on Autism and Why I'm Not Panicking

With three kids on the spectrum, and so many family members with autistic traits, to include my husband and myself, neither of these things scare me: a study showing that autism is present before birth and an increase in the number of children being diagnosed with autism. Once you see autism and know it, you recognize it in others far easier, and it, if your frame of reference is not one of panic and fear, surprises you not at all.

It becomes a normal human variation, with some distinct benefits and several distinct disadvantages in a hostile environment.

Onto the big things of last week:

Autism is present before birth.

"A STUDY published last week found that the brains of autistic children show abnormalities that are likely to have arisen before birth, which is consistent with a large body of previous evidence."-- New York Times

We're diagnosing it more often in 8 year olds. When we look for something, we're more likely to find it.

From the CDC:
  1. About 1 in 68 children (or 14.7 per 1,000 8 year olds) were identified with ASD. It is important to remember that this estimate is based on 8-year-old children living in 11 communities. It does not represent the entire population of children in the United States.
  2. This new estimate is roughly 30% higher than the estimate for 2008 (1 in 88), roughly 60% higher than the estimate for 2006 (1 in 110), and roughly 120% higher than the estimates for 2002 and 2000 (1 in 150). We don't know what is causing this increase. Some of it may be due to the way children are identified, diagnosed, and served in their local communities, but exactly how much is unknown.
  3. The number of children identified with ASD varied widely by community, from 1 in 175 children in areas of Alabama to 1 in 45 children in areas of New Jersey.
  4. Almost half (46%) of children identified with ASD had average or above average intellectual ability (IQ greater than 85).
  5. Boys were almost 5 times more likely to be identified with ASD than girls. About 1 in 42 boys and 1 in 189 girls were identified with ASD.
  6. White children were more likely to be identified with ASD than black or Hispanic children. About 1 in 63 white children, 1 in 81 black children, and 1 in 93 Hispanic children were identified with ASD.
  7. Less than half (44%) of children identified with ASD were evaluated for developmental concerns by the time they were 3 years old.
  8. Most children identified with ASD were not diagnosed until after age 4, even though children can be diagnosed as early as age 2.
  9. Black and Hispanic children identified with ASD were more likely than white children to have intellectual disability. A previous study has shown that children identified with ASD and intellectual disability have a greater number of ASD symptoms and a younger age at first diagnosis. Despite the greater burden of co-occurring intellectual disability among black and Hispanic children with ASD, these new data show that there was no difference among racial and ethnic groups in the age at which children were first diagnosed.
  10. About 80% of children identified with ASD either received special education services for autism at school or had an ASD diagnosis from a clinician. This means that the remaining 20% of children identified with ASD had symptoms of ASD documented in their records, but had not yet been classified as having ASD by a community professional in a school or clinic.

So what do parents of children on the spectrum do with these bits of information?

File them and keep on swimming.

It doesn't change anything for us, except let us know that our tribe is getting bigger.

Autism may be an underlying feature in our home and in our children (and ourselves--as BAPpy people), but it is not THE feature. We recognize each of our unique personalities, quirks, issues, and strengths. We got this. We adapt, and we work at recognizing where we fit in and where we don't, and we construct a life that caters to our strengths and we find our niche. If we find where we belong, we are happier with who we are, where we are and what we are doing.

I would make an awful salesperson. I make an excellent teacher.  So, I'm a teacher, not a salesman. 

There is no real normal. Not really. That's a myth that the majority, who keep their quirks hidden if it would cause them harm from others, push on outlyers. I don't have to fit in with something that's not real. I can go where I belong. 

I can raise my children to believe who they are is awesome and that their tribe awaits them. And so I do that.

I can give them the tools to navigate the necessary forays into the midst of the muggles so that they can get in and out in one piece.

It doesn't mean I have to turn them into muggles, just teach them the muggle phrases they need to be able to use.

The greatest gift we can give ourselves, each other, our children is the freedom to be who we are.

2 comments:

kathleen said...

"File them and keep on swimming" Best advice! That-and giving them the freedom to be who they are..yes!

Kleatexas said...

You are an AMAZZZZING teacher and I love you!! (((MOMMA Wombles)))